Anyone dealing with Atypical Ductal Hyperplasia (ADH)?

elsie37 - This is a very interesting question and I hope we'll all get to see some feedback on this question.
Looking back removing my breasts at Stage 0 (LCIS) would have been a good decision but I was monitored for 2 years and ended up with bi lateral mastectomy at Stage 1. Although I caught it early (good news), if "I knew then what I know now"......I would have opted for the mastectomy before my cancer became invasive.
I think the medical thought is that you may NOT get invasive cancer at all and then a doctor has put a patient at risk with an unnecessary surgery and the possible complications. BUT, I absolutely think women should have the option of having the mastectomies at any point in their treatment if they choose to do so.
It was telling to me that the physical therapist treating me for post mastectomy lymphedema shared that she had her breasts removed and had reconstruction at age 40 when diagnosed with DCIS because...........she had seen so many patients with lymphedema and cancer that had spread to their lymph nodes that she didn't want to put herself at that risk. This was a medical doctor who opted to remove her risk so she wouldn't have to go through what she was seeing her patients suffering. I think that is telling.
Another question I always ask oncologists is whether or not they have ever used chemotherapy or radiation on themselves even though they don't have cancer or whether they would use chemo and radiation if they got cancer. All of them, of course, say no they have never and would never use a drug on themselves if they didn't have the disease (which is of course the 'right' answer) but I'm often put off a little as they recommend treatments which can have devastating side effects and at the very least very troublesome side effects and say it's not that bad.........when they've never actually experienced anything close to the experience they are putting their patients through. (I have had this conversation with the several oncologists I'm working with for my cancer, my husband's and in the past my sister and step father, it is not received positively ...no surprise). I just think doctors need to remember that for each person diagnosed with cancer it a difficult diagnoses and that as doctors they have had to shield themselves from getting too personally involved in each patient but that can also mean they don't really hear their patients or understand that each one is unique in their ability to handle risk and make these very tough decisions. Since there is little chance we will change how doctors behave, as patients we must educate ourselves, reach out to others for feedback and have the right to make whatever decisions we feel are best suited to our ability to best manage our disease, our lives and our health.
I'd love to see any feedback from surgeons and oncologists on this issue.

As someone diagnosed with ADH, ALH, LCIS in both breasts from 4 biopsies at ages 58-59, I have spent a lot of time researching and have gotten numerous opinions from both oncologists and surgeons, including at Mayo*. The various online breast cancer sites I am on are filled with women who have opted for prophylactic mastectomies for these atypia conditions and the overwhelming consensus seems to be they are happy with their decisions. All the doctors I have talked to (with the exception of one oncologist who said she would not persuade me in any direction) say NO to prophylactic bi-lateral mastectomy.

I wonder what these doctors would say to one of the women they have counseled against breast removal after she has gotten an advanced stage of cancer. I always ask surgeons, radiologists, oncologists, NPs in breast care, etc. if they encounter late stage breast cancer, metastasized cancer or deaths from women who started with atypia and kept their breasts but eventually proceeded down the road, perhaps many years later, to something really bad. The answer they always give me is no, they don't see that.

But it seems there is a disconnect between women with this disease who want to remove the problem and the medical staff who seem to be more open to the risks. In fact the recent trends are less and less intervention, whether lower doses of drugs or less surgery.

Just wondering how the rest of you out there--pros and laypeople--might respond. Thank you.

*Very impressed with ALL aspects of my first visit to Mayo. What a place!!

@cindylb Thanks so much...marker goes in tomorrow at 8:30 and surgery at noon. Thanks for the hugs - I really need them! I'll keep you posted...

@elsie37
As a 52 yo woman with ductal and lobular atypia, schedule for DMX next week, I have to draw upon my background as a Financial analyst, and behavioural analysis , to make sense of that disconnect. It’s all about the risk analysis. And human tendency.
Study after study shows we humans are LOSS averse. Not risk averse. In fact we will take on additional risk in order to not ‘lose’. (Eg - someone at Vegas, already ‘down’, will DOUBLE DOWN (thereby taking on MORE risk ) in the HOPES of not ending up LOSING. )
We woman do NOT want to lose our lives. So we’ll take in the risks of surgeries to avoid that loss. The Drs? It’s not THEIR life they are pondering the potential loss of, so they completely objectively simply look at numbers and statistics.

As someone diagnosed with ADH, ALH, LCIS in both breasts from 4 biopsies at ages 58-59, I have spent a lot of time researching and have gotten numerous opinions from both oncologists and surgeons, including at Mayo*. The various online breast cancer sites I am on are filled with women who have opted for prophylactic mastectomies for these atypia conditions and the overwhelming consensus seems to be they are happy with their decisions. All the doctors I have talked to (with the exception of one oncologist who said she would not persuade me in any direction) say NO to prophylactic bi-lateral mastectomy.

I wonder what these doctors would say to one of the women they have counseled against breast removal after she has gotten an advanced stage of cancer. I always ask surgeons, radiologists, oncologists, NPs in breast care, etc. if they encounter late stage breast cancer, metastasized cancer or deaths from women who started with atypia and kept their breasts but eventually proceeded down the road, perhaps many years later, to something really bad. The answer they always give me is no, they don't see that.

But it seems there is a disconnect between women with this disease who want to remove the problem and the medical staff who seem to be more open to the risks. In fact the recent trends are less and less intervention, whether lower doses of drugs or less surgery.

Just wondering how the rest of you out there--pros and laypeople--might respond. Thank you.

*Very impressed with ALL aspects of my first visit to Mayo. What a place!!

@cindylb Thanks so much...marker goes in tomorrow at 8:30 and surgery at noon. Thanks for the hugs - I really need them! I'll keep you posted...

I was scared about the anesthesia too..........I can relate. But here I am and you'll be AOK too........Big hugs. Keep us all posted and keep reaching out. We've all been there. They are quite good at breast cancer surgery now. As my surgeon said, 'just be glad it's your breasts and not your insides'......those are much harder to be 'good' at getting whittled on, or so she thought (my breast surgeon was a general surgeon so she did multiple types of surgeries).

@cindylb I do have a good support of family and also my co-workers too. Yesterday was a difficult day...having all the signs of an anxiety attack, but today is better as my son, dil, and grandbabies decided to spend the weekend and keep me busy. I am not looking forward to the surgery, but mostly a bit scared over the anethesia. Just taking each day as it comes the best that I know how.

Here are some relevant videos related to this discussion about atypical breast lesions and prophylactic mastectomy - I hope.

Dr. Amy Degnim - Atypical breast lesions and benign breast disease

Dr. Tina Hieken - Bilateral prophylactic mastectomy

https://youtu.be/lX-sQ85eFOQ
Dr. Jennifer Racz - What to expect following bilateral prophylactic mastectomy surgery